Hi.

Sep 22 Life With a Crumb Finding Aspirator

Every crumb on my floor has the potential of ending up in Nathaniel's lungs.

I type that sentence and do not know what else to say. There should be something funny inserted here. But facing the gravity of life with this child, I struggle to keep it light. Twice today he has picked something up off the floor, put it in his mouth, and then had a coughing spell that required immediate suctioning.

Daily I am realizing new ways that knowing Nathaniel aspirates will affect our lives. Daily I am realizing how out of the ordinary it is not to be able to eat anything. A playmate's veggie straw snack can not be shared. Explain that to two toddlers who heard "Let's share," for most of their play date when tugging at toys. Sometimes things make so little sense that repeatedly stomping your feet is the most logical answer.

Now that I have seen Nathaniel swallow on video x-ray I understand his clinical symptoms better. I understand why he seems to manage his first bites of food or drink well, but the coughing and vomiting starts the more he consumes. I understand why he continues to cough and vomit for an hour after we finished a feeding session. Once food and fluid get under the epiglottis, it sits on the laryngeal webbing and stenosis for an extended time slowing emptying through the 1.6 millimeter opening in his airway and into his lungs. I understand why he seems to have cycles of coughing and vomiting. It is a physics problem really. More pressure from above forces fluid pooling on the stenosis to go somewhere. That somewhere is into Nathaniel's lungs. Vomiting must increase the fluid under the epiglottis and therefore increases the dripping. Aspirating leads to more aspirating. This is why we must suction four and five times an hour when Nathaniel is healthy. The epiglottis does not block saliva from entering the airway. Twenty-four hours a day it pools and drips. He senses it only after it is past the larynx and enters the trachea.

I wonder how this little one has made it this long without a more serious complications and illnesses. Sometimes only when I see a fuller picture of the brokenness do I really understand the power of God in protecting him.

Above photos are from our apple picking this weekend. Despite Nathaniel not being allowed to eat, we want to continue to expose him to allowable sensory experiences with food.